To Tell Or Not To Tell

Hi again.

The big question I have for you is why would you not want to tell your kids? Are you afraid they will worry?
Do you feel that you can explain it clearly? If not, I'm sure we can all come up with a really clear, brief description that's kid-level. You want to tell them that it's not contagious and it's not the end of the world. It's just something that everyone will have to get used to because it's chronic. It won't always be bad but when it is, you'll just need some time to feel better.

As for work -- that's a call each person has to figure out for herself. I've found that when my friends at work know, my life is easier. When my manager knows, it reduces my stress to know that I can come in late without any problems. Companies can't discriminate based on your health and they know that. You might be surprised at how understanding people can be. If you need time to heal up and get this under control, you can also see if your company has paid short-term disability leave. You get paid not to be there. (Kinda nice, I think.) The HR people are obligated to keep your info confidential, obviously.

when you mention a "stigma" do you think it's because people will look at you and think you're sick? If you really are sick, is that so bad? We all tend to tough it out and put on a good face for everyone else. Personally, I'll take the sympathy and understanding if it means that a few people will look at me funny when I run past them to the ladies room. :)

Let me know what you think. It's a good topic you bring up and I know everyone deals with it differently.

Charmin,

I know this is a hugely personal individual decision but I just wanted to give you my perspective from having crohns. I tell everybody about it and I feel like my life is SO much easier because of it. No making excuses, no worrying whether or not I can eat something, no hiding my pills... I like the control. I like not having people judging me for going to the bathroom so much. Instead of that weird girl that is always stinking up the employee restroom, I am the girl that has crohns. I like the second label a lot better. I like people joking with me that I am "lactarded" because I can't eat cheese. This is a part of my life that is never going to go away. It might get a lot better, but it wont disapeer. I just don't see the point in being so secretive. It may be gross but once I put it out there 99% of the time people share personal stuff about themselves or family members back. I am the one people come to talk to when they have medical stuff going on and don't know who to share with. I enjoy being that person.

Why have your friends think you are bailing on them with no good reason? If they know what is really going on with you they might even be able to help you out!! (drive your kids to school, make a dinner for your family, etc.)

As far as who to tell at work, this is what I would do. I would share it with the people that are around me enough where I may have to interupt a meeting or phone call with them to use the restroom. That way they understand. I would tell whoever it is I deal with when calling in sick/late. Then I would ask that person if there is anyone else in the company I should speak with (hr). If all you need is a little flexability in your hours than your immediate supervisor might be fine.

Once you are more comfortable being open with your disease at work short term disability might not seem like as much of a necessity. You could save it for a time when you are hospitalized or too sick to actually come in. Days that you are just pooping frequently you would be more comfortable working because others would understand why.

I don't really see how it is possable to have any semblence of a normal life with IBD without sharing it with other people.

thank you. i like all of your suggestions. i HAVE to something to try to feel better. opening up may help -- even if I keep it is a little vague with some groups.

my goodness this part is making me very emotional!

check out the ccfa website.
there are some articles in the "kids & teens" section which is really for helping kids who have crohn's or UC, but if you look over some of that, it may give you some ideas for what types of things to explain to your children. like the fact that it's not contagious.

they used to have a free comic book that was about a little boy with crohn's. again, while geared toward the child with the disease, it would certainly help explain your illness to your children.
i couldn't find the comic book just now, but maybe it's still on there somewhere.

I think the stress of not telling may also be contributing your flares. I would suggest to tell and you may be surprised that some of your friends may already by familiar with UC through their family member or friend. If you are this worked up about it, as UC dude commented, I would also suggest seeing a therapist. I did and it did help me to cope better.

I never really told anyone about my Uc until maybe a few years ago. Most of my close friends knew but not the extent. I finally opened up to them and explained to them what it was and what to expect. The new found understanding I got from them was great because I felt like I no longer had to find excuses. I now feel more comfortable about talking about it but I leave the details out. I typically explain to them that I have ulcers in my large intestine and leave it at that. I told my kids though when they were old enough to understand what I had so they have known for a long time. They're great because when I say I'm not feeling good, they don't pressure me for anything and actually they help around the house.

I was a girl scout leader for 3 years but had to quit because it was becoming too much. I sent a letter out to all my girl scout parents explaining to them the reason I was quitting and many of them came up to me and said that even though I was so ill, that they were proud of me for keeping up the troop. I had a rather large group of 20 girls. But they didn't look at me funny nor were they uncomfortable around me.

I think the older we get, the more we realize that everyone has something wrong with them. It's just a matter of what. There is nothing to be embarassed about with having Uc. It's a disease that is beyond your control. You didn't choose it, it chose you and having to learn to cope with it is tough no doubt. But when you have a group of understanding friends, coworkers or whatever, it makes things a lot easier on you. I personally don't see any stigma attached to this. But we all approach our illness differently.